My MS

MS is an autoimmune disease, that means that my immune system define my own nerve cell as enemies to fight down. This result in inflammation on the protective shield (myelin) around the nerve connections, resulting in signal problems between the mind and the muscles.

The most easy way to picture it, is to se our nervous system as the electric wires inside a house. I you have mice, monsters og anything else eating the white insulation around the wires – then you will have problem with electricity shortcuts and small explosions. Imagine that happening in your body……

There are three main types of MS:

RRMS – Relapse Remitting MS. This is the “light”-version, you are basically function ok, but get attacks (relapses) when there is inflammation in your nervous system. These relapses can come fast, or slowly over weeks and months. Normally, the inflammation will disappear by itself (remitting phase), and you will totally or partially regain your function. You can also speed up the remitting phase by getting steroid treatment (in Norway you normally get SoluMedrol, 3 days intravenous). This will not affect the total remitting. There is no way to predict an attack, or the frequency between them, but after years with MS, you will normally have more frequent attacks.

SPMS – Secundary Progressive MS. This is when you don’t recover significantly after an attack.

PPMS – Primary Progressive MS. With PPMS you don’t have attacks, but a slow downward curve with expanding disability without the good periods between.

A lot of MS-patients starts with RRMS, and go over to SPMS after a long time. My MS is RRMS.

My MS

I had my first MS-attack – optikusnevritt – when I was pregnant in 1986, and again in 1997. In 2001 I had a new attack, leading to the RRMS diagnose.

I got Rebif (interferon) from 2002- 2007, but stopped by my self due to severe side effects and my own opinion on the injections worsening the troubles after attacks.

2007 was my best year. I changed my diet completely, I lost about 22 lb /10 kg and 4,7 inch/12 cm off my waist. I did physical training 5 days a week all year through, and I had no attacks. Then I got a injury, reduced my training, and got several schubs.

I startet on Tysabri in 2010. After 20 treatments, I am still not sure wether it has had any effect. I stopped the treatment after my decmber 2010-treatment, because I am afraid it will interfere with the transplant, and I don’t want this to be the reason for delays.

So, what are my limitations now, february 2012?

  • I can no longer go skiing. Shifting my weight from left leg to right leg is not working.
  • I can no longer go jogging. Last attempt was the summer of 2008, but after 10 minutes I became a danger to traffic.
  • My eyesight is a bit reduced on my left eye, but that has been constant for 26 years
  • Stairs are difficult, especially on the way down. Could get a lot faster that I like 😉
  • I know where all public toilets are, no matter where I am.
  • I have some spasms and overly active reflexes, especially in my right leg.
  • I have trouble with long walks. My realistic range is about 500 m now.
  • I can no longer practice Taekwon-Do, mostly because there are very few of the techniques that favors the right knee dropping inwards, and the foot sliding randoml.
  • I avoid public transportation. Steps, movement, toilet facilities, walking to and from…..
  • Putting on socks standing up, is high risk sport 🙂
  • In addition to this, I have a lot of minor symptoms that I control with mind teqniques, like tinnitus, MS-inching, numbness….
  • So basically – I can still do normal things, as just sometimes takes long time.
But more interesting is – what can I still do?
  • I can still work a lot. I just love my job, and that make my body function better. I can still stand for hours lecturing, but the last months i like to sit down talking to my participants.
  • I can do heavy strength training, especially arms, shoulders, and cycling.
  • I can still do yoga, but one leg stance is not easy 🙂
  • My arms are perfect!
  • I can showel snow. I thought I could do it for an hour, but that was last winter. Yesterday I could hardly walk after 20 minutes.
  • And I can dance. Not as long as before, but since I love it – I dance until I drop on the floor 🙂

 

In october 2011 I started the process of being admitted to Stem Cell Transplant. This is based on this: If the treatment only stops my MS, I’m in a hurry to still be able to work and at least do some training. If the treatment also reverse some of my symptoms – thats a very welcome bonus.

But of course, I hope for 100% stopping and 100% reversing 🙂 Having a very benign MS, there is reason to hope this, in combination of my preparations. I just need the reboot – to be able to continue the job and training that I love.


3 thoughts on “My MS

  1. Dette var både interessant og sterk lesing. Jammen er det tøft det du er i gang med nå, både behandling og blog, og jeg ønsker deg riktig lykke til med alt. Det blir spennende å følge deg videre. Vet ikke om du lar deg inspirere av “Ingen grenser”, men vi planlegger tur til Snøhetta til sommeren, kanskje du vil være med?

  2. Jeg synes det er superspennende hva du skal igjennom, det er kjempetøft! Og tusen takk for at du tråkker stien for oss andre!!

    Masse lykke til videre!!

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